Careful Recumbent Exercise as Therapy for POTS vs ME/CFS - Unraveling the Contradiction + POLL

[Runner5]

After each crash I never return to the 'before-crash-level-of-activity' -- so say I finally work up to an hour at the gym for several months before I crash. Afterward, when I start feeling better, I can work up to 30 minutes but I never return to an hour, I simply don't have it in me.

I will choose gym time over laundry, grocery shopping, or other really important stuff because it makes me feel maybe slightly more normal or gets me out of the house and doing something fun. So I tend to spend my entire energy envelope on working out. ( I have a blog post about how I prevent and deal with PEM)

I think if working out and exercising cured or helped or contributed to curing CFS / ME -- I would have it made by golly. Haha.

I do try to at least get in a little gentle Yoga everyday.

My CFS / ME I attribute to a gastic / GI issue and not EBV or Viral (although I have not been tested), additionally I do not have POTS. I've had CFS for 5 years.

 

[Gingergrrl]

Lol hmm I guess the last option

Which one do you mean? I'm actually very curious and wasn't sure if you meant the last option in the poll or in your description in your post? By 2015, I literally did not have the muscle strength to open a bottle of water or transfer from wheelchair to table without assistance. Now I can do things that I consider "exertion" like standing for 20 minutes to wash a full sink of dishes, doing 3-4 loads of laundry from start to finish, walking further without wheelchair, etc. In any other world, these would not be considered "exercise" but from pre-treatment to now, I often do consider them exercise in a weird way. If I ever get to the point of trying "real" exercise, it would have to be in a seated position b/c of having POTS (but am nowhere even close to that point yet).

That’s interesting. Maybe a good term is POTS / MCAS plus. You’ve got whatever causes other autoimmune POTS cases (possibly the CellTrend stuff), but also something extra (almost MG-like). The combo of mold, EBV, and abx must’ve created some sort of very unique molecular mimicry (or something).

I'm never certain if I understand "molecular mimicry" but do you mean that the viral and mold stuff triggered autoantibodies that now "mimic" something else and are attacking my body b/c of that mimicking process? The "MG like" stuff is 100% gone from IVIG and Ritux.

It's truly the autonomic stuff that remains the most intractable. Even if I stand up and my HR goes from 60 to 110 (and never again goes to 160 or 170 like before), that is still a 50 point jump. And often even when my HR stays normal (from Atenolol & Midodrine), I get other symptoms that are equally disabling when I walk.

It is so odd though b/c I (now) have no limits with standing. I stood in my mom's hospital room (basically in one spot or taking no more than 4-5 steps at a time) for over an hour the other day. But if I had to walk down the hallway (several hundred steps) that same day, I could not have done it.

Remind me you had GAD ABs right?

Yes I have anti GAD65 autoantibodies on tests from Mayo and Quest labs. Does this relate to this issue? I know it related to my extremely exaggerated startle reflex (b/c of excess glutamate and not enough GABA) but with high dose IVIG, that disappeared and so far, has never returned. My Endo most concerned with diabetes risk from that autoantibody but I am 100% negative for diabetes on all tests.

 

[Sushi]

I wonder... the second Levine study does show a ~50% drop out rate. She seems to chalk it up to fortitude, but maybe they worsened on a metabolic level

That was my thought too.

Wow he sounds like a great doctor. What kind of testing did he do to arrive at his recommendations?

He did extensive autonomic testing--6 - 8 separate tests (don't have them in front of me) and correlated them second by second with HR and BP. This gave him a lot of data to analyze.

 

[Ravn]

Interesting question.

Have probably had mild POTS for nearly 40 years (the diagnosis didn't exist back then). No problem with any sort of exercise then (as long as it didn't involve standing still ).

ME of unclear onset:

• Possible mild viral-triggered episode in 2012. POTS unchanged but unable to exercise until recovered from episode.
• Insiduous deterioration from about 2015. POTS still unchanged but aerobic exercise tolerance slowly decreasing despite valiant attempts to maitain fitness (didn't know about ME back then) and at some point registered a predictable 20-hour delayed "crash" that in hindsight I recognise as PEM.
• Major overnight deterioration after a minor medical procedure gone wrong. POTS much worse, especially during PEM. Unable to tolerate any sort of exercise.

So:

1. POTS came first and didn't affect my exercise tolerance. This points to exercise being no problem in mild, primary POTS.
2. ME came second and exercise intolerance/PEM arrived with it. Well, we do know the two go hand in hand.
3. Muddying the waters is the worsened POTS that arrived when my ME deteriorated to moderate-severe. Is this still the primary POTS, or is it possible to have primary POTS plus a different POTS secondary to ME?

 

[Sancar]

Dysautonomia International just had a webinar with Dr. Systrom about POTS entitled: "Exercise Research in POTS: It's not Deconditioning!" I wanted to attend, but the webinar was full. Hopefully they will post the content soon.

Hi @Diwi9 ~ I would also appreciate seeing this webinar! I was diagnosed with Dysautonomia at Clevalnd Clinc in 2011. So much information has been revealed since then. It has always had a relationship with POTS. If you do find it will you please tag me so I may view it as well?Thank you

 

[Diwi9]

Hi @Diwi9 ~ I would also appreciate seeing this webinar! I was diagnosed with Dysautonomia at Clevalnd Clinc in 2011. So much information has been revealed since then. I has always had a relationship with POTS. If you do find it will you please tag me so I may view it as well?Thank you

I clicked on the link and had to sign up to Dysautonomia International's newsletter. They said the webinar will be released in the February edition, so it's going to be some time. They have many good videos already posted to Vimeo if you're looking for research updates in the meantime: https://vimeo.com/dysautonomia

 

[Sancar]

@Diwi9 ~ Thank you! Great info

 

[Wally]

@Diwi9 - Looks like the seminar on Dysautomonia that you were interested in is now available on Vimeo.

 

[panckage]

I have both ME and POTS. Deconditoining seems to make POTS really bad. When my ME symptoms improve I can exercise more and that seems to minimize the POTS symptoms

It seems deconditioning is what cause my POTS. That being said I had problems with dizziness as a teenager (before I got ME). I never thought much about it but it is certainly minor compared to what I experience now